Q&A Session from Meet the Experts in San Diego

Thank you for all that attended out Meet the Experts event in San Diego at the American Thoracic Society conference. For those of you who were unable to attend here are the minutes from the event.

Meet the Experts Panel

Patient Q&A Session at ATS 2014

May 17, 2014

Nabeel Hamzeh, MD
Daniel Culver, DO
Karen Patterson, MD
Lisa Maier, MD

The following questions and answers are a sample of what was discussed at the Meet the Experts panel. For information on upcoming events like this, click here. Thank you to all of the patients who came out to ask their questions, and to our panel of doctors for their time and insights!


Q: I’m concerned about my levels of Vitamin D. Is there anything I should be careful of?

Granulomas increase the active form of Vitamin D, which can lead to high levels, but most patients don’t have complications. The usual advice for high levels is to look at diet, calcium or D supplements, dairy intake, and excessive sun exposure. Long-term consequences including risk of developing kidney stones is small. Lifestyle modifications can manage high levels. Most patients don’t have issues with high calcium levels, though they should be monitored and lowered if possible.

The blood test you get from your doctor for Vitamin D does not check active D levels, and can be misleading. Measure both active and inactive levels of Vitamin D to get an accurate reading. Vitamin D can be beneficial in the body and does not necessarily make sarcoidosis worse.


Q: Are there any new medications for patients?

We try very hard to find alternatives to steroids that are tolerable and effective. There are a number of steroid-sparing options, that have not caught on yet in the pulmonary community, but there is a general movement towards alternatives. There are two medications that are FDA-approved for sarcoidosis, including Acthar gel, with studies being done soon to see the effects on sarcoidosis. Methotrexate, Rituximab, etc are all other options. The main point is to not get stuck on one drug if it’s not working for you – you just have to try and see what works.


Q: What’s the point of the drugs, if people relapse after they stop them?

There’s two main reasons to treat sarcoidosis. One is danger when a vital organ is failing or in risk of failing, and the other is quality of life. For many patients, the treatment is worse than the disease. We see a lot of patients who get diagnosed and are immediately put on Prednisone. We then have to wean them off of it to see what their disease really looks like and whether or not they need treatment.


Q: What happens to granulomas long-term with these drugs?

Granulomas, with treatment or time, if you’re lucky, should go away – the cells dissolve. Sometimes they persist for reasons we don’t understand, and can have scar tissue (fibrosis) build up in the organs. We can give medicine to suppress the inflammation and dissolve the cells – sometimes all of the medicine in the world will not work. There is no magic answer or magic bullet. Some patients respond to one medicine vs. another or a different dosage.


Q: Why do granulomas persist?

We don’t know. We have very little understanding why they persist for decades in some patients, but go away quickly in others. There are some theories currently, but no known data. Some people may have better inflammation suppressing systems than others, but we just don’t know.


Q: I have persistent chronic joint pain, is this normal?

Yes! I think that’s one of the harder aspects of sarcoidosis, it’s very common. It doesn’t mean that the sarcoidosis is in your joints necessarily, and we could treat the pain with steroids, but that doesn’t necessarily treat the sarcoidosis. One of the hardest things about sarcoidosis is knowing what’s caused by sarcoidosis and what’s not – joint pain, a rash, a headache? Joint pain is not usually very responsive to sarcoidosis medicines.


Q: Are there any new advances in chronic fatigue treatment in relation to sarcoidosis?

Chronic fatigue, or small fiber neuropathy, may explain some part of the fatigue we see in sarcoidosis. It is tough to manage as immunosuppressive therapies have not been that successful for fatigue in sarcoidosis. Lifestyle changes such as diet and exercise, may help.


Q: It took two years for me to get diagnosed, and I served in Vietnam – are you in a better position to identify groups like this, and are you promoting this to PCPs?

This is a very common story. We’ve become slightly better at diagnosing over the years, and more physicians are aware of it now and it is not as rare as we used to think – depending on how you present and whether it’s ‘classic’ or otherwise. Sarcoidosis is probably caused by something inhaled, but we don’t know what causes it, and we can’t say if Vietnam is the reason why. We’re participating in a national study right now to understand what causes sarcoidosis called GRADS, trying to get a better idea of if there is an infectious particle. If anyone is interested, please contact FSR at info@stopsarcoidosis.org to get involved. There are multiple sites around the country.


Q: I believe I have asthma, but I’m not sure if it’s caused by my sarcoidosis.

Sarcoidosis that behaves like asthma is quite common, in a lot of ways – pollen, smokes, etc. can trigger wheezing, coughing, chest tightness, flare-ups. You could indeed have asthma as well as sarcoidosis. It’s very tricky to distinguish, but for the vast bulk of people, they can be managed just about the same way – aggressive inhaler therapy is usually sufficient. If you can manage it, it doesn’t really matter what you call it.


Q: Do you know if there’s any move to have actual sarcoidosis specialists in HMOs or PPOs instead of being shuffled around to different doctors?

Unless patients and employers push for that, I’m skeptical that that will happen in individual insurance entities. The FSR website has a Physician Finder which lists sarcoidosis specialists. We’re also working on labeling sarcoidosis centers of excellence to work on the patients as a whole rather than shuffling you around.


Q: Is there much being done in genetic testing, for our children, etc?

There have been a number of studies done to look at genetic predictors – we think we understand what causes this disease, so we have tried to look at different genetic markers in these areas. We haven’t found a lot yet, but we are beginning to uncover that there are some genes. They seem to be associated with a lot of other immune diseases like arthritis, diabetes, Crohn’s, etc. Right now there are no genetic tests with a reasonable degree of certainty – but we do know there is a genetic predisposition and it can run in families. We can’t say right now as individuals if your family will be at a greater risk. Keep this in mind for your family history when going to the doctor with any issues.


Q: I was a firefighter, and a lot of my colleagues were at Ground Zero after 9/11 and developed sarcoidosis after that, is there a link?

There was a study in the mid-90’s by a pulmonologist for the FDNY, and he had already seen a higher rate of sarcoidosis among firefighters, and also noticed that firefighters have more x-rays. Many of them had the disease resolved. He was very involved after 9/11 evaluating people, and there was a clear spike in the number of cases of sarcoidosis. Within a year after 9/11, there was a big spike, which has now come back down. Other first responders also have a higher instance of sarcoidosis. Some people have gotten compensation for work-related sarcoidosis.


Q: Why do I have chest pains with my sarcoidosis?

This is very common, though we don’t know why patients get chest pain with sarcoidosis – I have a hypothesis about damage to small nerve fibers, but that’s just a guess. It does not seem to respond very well to Prednisone and anti-inflammatories. Unfortunately there’s not a lot you can do other than managing the pain.


Q: Are they starting to link between Alzheimer’s, dementia, and sarcoidosis?

Depression, fatigue, small fiber neuropathy, sleep apnea are common in sarcoidosis, and contribute to cognitive dysfunction. Sarcoidosis is inflammatory, so it can be causing cognitive dysfunction itself, but this is different than Alzheimer’s and dementia specifically. One of our colleagues is working on this, and is finding some abnormalities. Most of us see this is a problem, and trying to pinpoint the cause is not straightforward or easy. Some of my patients call it “brain fog” or not feeling as well.


Q: Should my pulmonologist send me to see a specialist?

It’s not necessary for most patients, but the threshold is if there’s something about the course of your disease that’s atypical and your pulmonologist doesn’t know how to treat it, or doesn’t feel comfortable treating sarcoidosis. Even if you go once a year to check in with a specialist, they can then be in touch with your local doctors.

FSR has a treatment guideline online that is meant for people to take to their providers, and for providers to use to know how to treat sarcoidosis. it’s meant as a way for physicians to have help and for patients to help them.


Q: Is it possible to diagnose lesions in the brain as sarcoidosis without a biopsy?

Almost always we make the diagnosis without a biopsy. The number of cases where that’s necessary is less than 5%. Going through a brain biopsy is usually avoidable, though you want somebody who knows what to look for in the MRI – spinal fluid can be helpful, and other organs can give us a good picture of what’s going on in the brain.


Q: I have many symptoms, but my doctor says since it’s not in my lungs or heart, it’s not sarcoidosis.

When this disease does not present as “classic”, sometimes doctors don’t feel comfortable because they don’t know what to do. 90% of people have lung involvement, but that doesn’t make it the predominant problem for them. Somebody with enough experience can identify a cluster of symptoms – perfect example of when a one-time evaluation can be helpful. Go see a sarcoidosis specialist who can give you a definitive answer. A lot of people in community practices don’t have a clinic set up to handle that.


Q: Should I change my diet to decrease inflammation?

There is no study in sarcoidosis to answer this, but there is growing data for lung diseases and general health that eating a good healthy diet is the best option for people. We know highly processed foods can be associated with high levels of inflammation. Eating well, regular exercise, getting good sleep, and trying to reduce stress all have been shown to be anti-inflammatory in other diseases and by themselves.


Q: Are there other occupations where you see a high incidence of sarcoidosis, or certain parts of the country or world?

There are certain areas of the world and country that tend to have more sarcoidosis cases. Some of that is due to genetics. In Europe, there are some countries where there’s a higher incidence. For instance, Irish living in London have a much higher incidence, which points to genetics. In the US, the southeast, especially close to the coast is higher, which points to environmental factors. There may be something that triggers sarcoidosis, or more than one thing, but there may also be modifier exposures. For example, people exposed to photocopier toner have a higher instance – this probably does not cause sarcoidosis, but it can affect your immune system response. Dusty environments, moist, damp environments, occupations where you’re breathing in particulate matter all have higher instances.


Q: What is the effectiveness of transplants with sarcoidosis, does the sarcoidosis come back?

It’s usually a small number of patients that need a lung transplant. Studies seem to suggest their prognosis is as good as anybody else with a lung transplant. There are a few rare cases where the sarcoidosis came back in the transplant lung. Transplant patients go on immunosuppressive drugs, which also treat the sarcoidosis. Heart transplant patients have as good of a prognosis as any other heart transplant patients.


Q: One final piece of advice?

Sarcoidosis can cause a lot of symptoms, but it doesn’t mean that all of your symptoms are caused by sarcoidosis. Physicians who are unfamiliar will blame everything on sarcoidosis, but you need to question what else it could be. Be vigilant, but don’t be obsessed.

Make sure you take time for yourself. By that I mean to take care of yourself, the healthy living we mentioned. Make sure you’re not driving yourself into the ground taking care of your family.

Don’t be afraid to ask why. Be your own advocate. Many of you probably know as much or more than the doctor you’re seeing about the disease. This is a journey, and it’s going to take dialogue and working together between you and your treating doctor. You need to be an active participant in that – if you don’t like the answers, if you’re hearing hedging or inconsistencies, go get a second opinion. Be your own advocate.


These statements do not reflect professional opinions, diagnoses, treatment, or services to you or any other individual. The information provided on this page is not a substitute for medical or professional care, and you should not use the information in place of a visit to your healthcare provider. FSR is not liable or responsible for any advice, course of treatment, diagnosis, or any other information, services, or product you obtain through this page.

By Kimmia Forouzesh|June 12th, 2014|News & Events|FSR

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